利用复杂的护理网络：在资源有限的环境中导航姑息治疗的患者和家庭的民族志
Utilizing intricate care networks: An ethnography of patients and families navigating palliative care in a resource-limited setting
影响因子:3.90000
分区:医学2区 / 卫生保健与服务2区 医学：内科2区 公共卫生、环境卫生与职业卫生2区
发表日期:2025 Jan
作者:
Raditya Bagas Wicaksono, Amalia Muhaimin, Dick L Willems, Jeannette Pols
摘要
非传染性疾病负担和衰老人口的增加导致在各种环境中需要姑息治疗的需求增加。但是，在印度尼西亚等资源有限的环境中，尤其是在农村地区，缺乏专业的姑息治疗。关于特定的姑息治疗导航知之甚少，因为先前的研究主要集中在癌症护理导航上。当地量身定制的方法至关重要。要探索患者和家庭如何导致姑息治疗及其所遇到的问题。采用深入的访谈和观察的民族志研究，使用反思性主题分析进行分析。与49名参与者（患者，家庭护理人员和卫生专业人员）和12名患者群体的自我观察和INDINES NINDINES，INDINDENTIANT和INDINDERIANS，INDINDERIANS，INDINDERIANS。策略：（1）帮助自己，（2）利用互补和替代医学，（3）避免讨论心理问题，（4）动员富有同情心和倡导社区，以及（5）通过宗教实践寻求精神护理。我们的参与者在导航姑息治疗方面使用了复杂的护理网络，尽管有限的护理网络。医疗系统中的障碍源于一些问题，并且缺乏公众的姑息治疗意识。当地的初级卫生中心可以通过建立预先存在的计划并参与社区卫生志愿者来成为潜在的姑息治疗领导者。在社区中培养共同的哲学可以加强护理协作和支持。
Abstract
The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial.To explore how patients and families navigate palliative care and the problems they experience.An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis.Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia.Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices.Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.